Genetic Discrimination

Last fall, the Huntington Society of Canada was successful in bringing
the issue of genetic discrimination to the attention of Canada’s
Conservative government. Since that time, HSC has been instrumental
in establishing the Canadian Coalition for Genetic Fairness (CCGF),
an advocacy-based organization urging the Canadian government
to develop and implement a “made in Canada” strategy designed to
eliminate this type of discrimination.

The CCGF wants to ensure that genetic data is used properly without
fear of repercussion. Genetic discrimination is a reality in Canada,
causing people to be rejected for employment or considered for a
lower level of employment, or resulting in a loss of access to insurance
based on the presumption that the individual may be disabled in the
future. The new strategy would prevent employers and insurers from
pushing applicants to take genetic tests or using genetic information
or family histories for the purpose of assessing the applicant’s risk of
becoming a liability by being disabled at some point in future.
Interest in CCGF has been growing at a steady rate with confirmed
membership from a number of organizations, including the ALS
Society of Canada, Alzheimer Society of Canada, Canadian Cystic
Fibrosis Foundation, Canadian College of Medical Geneticists,
Huntington Society of Canada, Muscular Dystrophy Canada, Multiple
Sclerosis Society of Canada, Osteoporosis Canada, Ovarian Cancer
Canada, Parkinson Society of Canada, Spina Bifida and Hydrocephalus
Association of Canada, the Foundation Fighting Blindness, the Centre
for Molecular Medicine UBC and the Tourette Syndrome Foundation of
Canada. Other organizations are showing continued interest in joining
the cause.

Recently, Jo Anne Watton, HSC’s Director of Individual and Family
Services, met with the prime minister’s office and confirmed that the
government has not backed away from its platform commitment to
HSC. She has received support from Minister of Justice Rob Nicholson
and also sent letters to the federal ministers of industry, health,
intergovernmental affairs and labour, followed by meetings with the
justice, industry and health ministries.

“We’re routinely ‘papering’ Ottawa every week,” Jo Anne explained.
The goal of the CCGF is to see changes made to the Personal
Information Protection and Electronic Documents Act (PIPEDA), which
is being reviewed beginning this year and extending into 2010. Trying
to advocate for a change to human rights legislation would take years,
Jo Anne explained. Having changes made to PIPEDA is much more
feasible and would still provide a huge benefit to people with HD and
their families.

HSC is building a growing list of contacts within the federal
government and routinely forwarding news articles featuring issues
pertinent to HD. Pushing the issue of genetic discrimination into the
forefront also involves reaching out to other stakeholder agencies
and making contact with local MPs. Jo Anne is working on a new
communications strategy that will give more publicity to CCGF
through various communications vehicles and the HSC website.
“(HSC is) really taking a lead in this,” Jo Anne said. “We are showing
the leadership. Other people are joining but it’s our leadership that’s
bringing this together.”

CCGF’s goal is to ultimately protect the personal information of
people with genetic diseases or disorders, allowing them to make the
decision to undergo predictive testing in their own time and for their
own reasons. This very personal information needs to be shielded
from organizations like insurance companies, who can currently deny
essentials like mortgage, life and disability insurance based on a
genetic predisposition to a disease.

There have been known cases where clients have gone to their
banks for mortgage insurance and were denied because someone in
the family had a history of HD, even though the applicant was gene
negative and not at risk of developing the disease, Jo Anne explained.
Protecting people from genetic discrimination has many benefits,
particularly the freedom to allow individuals to get testing done when
they’re emotionally prepared without worrying about a backlash from
insurance providers or employers. It could also mean more people
would be willing to get involved in clinical trials, boosting research
efforts and creating a better understanding of the genetics behind
disease.

The issue is a critical one. As research advances, there are more and
more diseases displaying a genetic component. “Who among us has
perfect genes?” Jo Anne pointed out. “Everyone will be at risk and no
one will be insured.”

Though other countries have taken important steps in eliminating
genetic discrimination, Canada is falling behind. But CCGF is
working hard to bring a necessary level of privacy and protection to
Canadians. It’s a long, slow process but one that continues to forge
ahead.

Reaching an acceptable level of protection from genetic
discrimination is “a bit of an evolutionary thing,” Jo Anne said. “How
we are able to make that happen will depend on the opportunities
that are put before us.”

Saturday, September 12, 11:30 am (PST)
Westin Bayshore, Vancouver, BC (World Congress on HD)
Proxy is included with this issue. Ensure that your membership is in good standing to make certain your vote counts.
Huntington Society of Canada